FSHD update

Hi All! It's been awhile. But I MAY be back on track with my once every 60+ days posts! And all thanks to my friend Janelle, who, graciously helped me work through some of my more current blog-issues this afternoon. So, thanks J! =)

I wanted to post an update on where things are at with my health. Besides my initial disclosure blog about being diagnosed with FSHD, I haven't discussed it on the blog any further. But I get asked a lot, "How are things going?!" and so, I thought I would at least post some sort of an update as to where things are currently at.

As most of you are aware, I am currently on medical leave from work. I'm going to try and keep this update strictly medical. I'm not really going to go into ALL that taking this leave has shown, done and produced in and for me, mentally, relationally and spiritually, because there is simply too much. I'm serious...there is a chance your retinas could burn out from reading the screen if I wrote it all out. So, for the sake of your eyesight, you are getting the medical-version. If you are interested in hearing the other stuff, call or write me...I'd be happy to tell you. =)   

Since the initial diagnosis in April 2010, my body has begun to deteriorate a lot quicker than I had hoped or expected. I had an appointment already scheduled with my FSH doctors in early September so I thought I would see what they had to say about what I was experiencing. And here is what I was told:  "Ashley, for people with a chronic disease, excess-stress will always, always, always speed up the progression of the disease. If you do not start taking this seriously, you will be doing irreversible damage to your body and your life."  I sat there and thought...UM....OK....so that doesn't sound good.  I'd like to say I left that appointment with a fire in my belly to make some real changes in my life, but it would be lie. Instead, I did what many of us do when we are overwhelmed with having to make tough life decisions........I didn't do anything. I went back to doing life as I had been doing it. But by the end of September 2010, I was a complete mess both physically and mentally. I was losing it and I finally started to get it. Thus began the task of preparing to take a leave of absence. I didn't know what was to become of it, but I felt confident that it needed to be taken.

Since November 1st there have been some key things that have taken place physically speaking. I faithfully participate in water aerobics twice a week in order to keep my muscles conditioned. This helps me maintain motion in the affected areas as well as help to build up my muscles in the unaffected areas. Exercise alone has been immensely beneficial. I feel stronger and my range of motion has improved a little. I would say that physically speaking, I have more good days than bad...and this was not the case before. I'm living with less headaches and less back pain and feeling stronger and more capable.

I am also participating in an 8-week anti-anxiety workshop through Kaiser. Each Tuesday night, I spend an hour and a half learning ways to reduce my stress and anxiety. I also got hooked up with the chronic-pain management clinic at Kaiser. I now have (another) team of (local) doctors monitoring my condition. Both clinics are providing me with various ways to "live well, be well and thrive."  (Oh my goodness, I just crack myself up. In case you did not know, "Live well, be well and thrive" is Kaiser Permanente's slogan. I'll be here all week folks-please tip your wait staff!) =)

Anyways...I'm doing well. My leave is (too) quickly coming to an end and more life altering choices will need to be made. Yea...I can't wait. You all know how these life altering, huge leaps of faith are just so fun and easy and natural?! NOT!! But, I am confident that God is in control, that He is good, that He loves me very much and that His plans are better than any I could dream up on my own.